Radiation Proctitis: What to Ask

This page is for people having pelvic radiation who want to prepare for visits about radiation proctitis (irritation of the lining of the rectum). It lists questions to ask at each stage.

The National Cancer Institute's radiation proctitis page ends with questions it expects patients to raise in clinic. They are a good backbone for the visit because they come from the source itself:

• "What symptoms or problems should I call you about?"
• "What medicines can I take for diarrhea and other radiation proctitis symptoms?"
• "What can help decrease rectal pain and irritation?"
• "What liquids and foods should I have each day? What ones should I avoid?"
• "Could I meet with a registered dietitian?"

Everything below is a follow-up question those five open up.

Radiation proctitis "can happen when radiation therapy damages the lining of the rectum," so some of the risk is set by the plan itself. NCI lists what raises the chance: radiation "over a large area of your pelvis," "large doses of radiation," radiation "after surgery to the pelvis," and chemotherapy given at the same time as radiation therapy. Diabetes, inflammatory bowel disease, high blood pressure, other vascular disease and tobacco use are also on the list.

Worth asking:

• Which of those risk factors apply to me?
• How close is my rectum to the treatment area?
• Does anything about the technique you are using lower the dose to the rectum?
• Should I stop tobacco before we start, and can you refer me for help with that?

NCI's instruction is not conditional: "Tell your health care team if you have symptoms of radiation proctitis." The symptoms it names are diarrhea, "frequent or persistent urges to have a bowel movement," "abdominal pain or cramps," and "blood or mucus in stool."

Worth asking:

• Is what I am having expected at this point, or more than you expected?
• Do you want to hear about every change, or only past a threshold you set for me?
• Which number reaches someone in the evening and on weekends?

Do not quietly file bleeding under normal. NCI tells patients to tell the doctor if they notice any of these problems, and blood or mucus in stool is one of them. That holds even if you have had hemorrhoids for years.

Worth asking:

• How much bleeding, and how often, means calling the same day rather than mentioning it next visit?
• Do you want to look at it, or are you comfortable calling it radiation without a test?
• Do any of my current medicines make bleeding more likely?

This is the part most people are not expecting. NCI says "your doctor will do a physical exam and ask about your symptoms," and evaluation may include a sigmoidoscopy, a CT scan or an MRI, along with stool and blood tests.

Worth asking:

• Which of those do I need, and what are you trying to rule out?
• What would a result actually change in my plan?
• How soon can it be scheduled, and who does it?

NCI's listed approaches are medicines and changes to diet: "eating frequent small meals, low-fiber foods," foods "high in sodium or potassium," warm shallow baths (sitz baths), and keeping up with fluids.

Worth asking:

• Which specific medicine do you want me on, at what dose, and for how long?
• Can you refer me to a registered dietitian, as NCI suggests?
• How long should I stay on low-fiber eating before trying to return to normal?
• Are sitz baths right for me, and how often?

NCI draws a clear line between the two forms: "Acute radiation proctitis begins shortly after you start radiation treatment and goes away a few weeks after radiation treatment ends." The chronic form lasts longer and its symptoms are more severe, including rectal pain and bleeding and loss of control over bowel movements.

Worth asking:

• By when should this have settled if it is the acute form?
• If it has not settled by then, who manages it, and do I come back to you or to someone else?
• Years from now, which symptoms should send me back to be checked?

The page above is about the conversation. This part is about the moment you cannot wait for it.

• Call 911 or go to an emergency department if you are passing a lot of blood and feel faint, lightheaded, or breathless with it. MedlinePlus treats dizziness alongside rectal bleeding as a reason to be seen straight away. Do not drive yourself.
• Call 911 or go to an emergency department if the stool turns black and tarry. That can mean bleeding higher up in the gut (MedlinePlus, Gastrointestinal bleeding). Do not drive yourself.
• Call your care team right away if blood appears in your stool for the first time (MedlinePlus, Bloody or tarry stools).
• Call your care team the same day if mucus appears in your stool for the first time, or if cramping in your belly becomes severe. NCI asks patients to tell their team about blood or mucus in stool.
• Call your care team the same day if diarrhea or the constant urge to go is not settling with what you were given, or if you cannot drink enough to keep up with what you are losing.

Sources for this section: MedlinePlus, Bloody or tarry stools, and the NCI page listed below.

For what radiation proctitis is, how it feels day to day, and the diet and medicine detail, see Bowel Urgency & Radiation Proctitis Management and Side Effects Overview.

• National Cancer Institute, Radiation Proctitis